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This article evaluates the evidence regarding the needs of older adults with early-stage Alzheimer’s disease (AD) and is intended to raise health professionals’ awareness of the needs and maintained awareness of these individuals. It is applicable to professionals in many disciplines, including primary care physicians, nurses, recreation therapists, and researchers.
Awareness in People with Early-Stage Alzheimer’s Disease
A growing body of evidence concerning retained awareness in people with early-stage AD serves as background for the identification of evidence-based needs. For several decades, it has been assumed that older adults with AD, even in the early disease stages, were unaware of their condition, its implications for their lives, and disease-related losses. Retained awareness in these individuals is relevant in appropriate self-identification of needs (Burgener, Twigg, & Popovich, 2005, evidence grade: C1; Clare, Marková, Verhey, & Kenny, 2005, evidence grade: A1). A more complete review of the evidence is presented in the article by Specht, Taylor, and Bossen on pages 16–22 of this issue.
Need for Early Diagnosis
There are many well-supported implications of the need for early diagnosis. The earlier AD is differentially diagnosed, the earlier both pharmacological and nonpharmacological interventions are possible. It is important to track changes over time with sensitive tools, so interventions may be targeted at regaining or compensating for failing skills or minimizing losses (Farias et al., 2006, evidence grade: C1; Salmon & Lange, 2001, evidence grade: A1).
Because of the growing emphasis on early detection and intervention in AD care, a clear evidence base for cognitive training and rehabilitation is increasingly needed (Clare & Woods, 2003, evidence grade: A1). Not only is there a need for early diagnosis, but the need for more accurate diagnosis has been identified. Several studies have found that more than just cognitive changes are evident in the early disease stages, supporting the need to assess a variety of cognitive and functional domains (Artero & Ritchie, 2003, evidence grade: C1; Bäckman, Jones, Berger, Laukka, & Small, 2004, evidence grade: A1; Richards, Moniz-Cook, Duggan, Carr, & Wang, 2003, evidence grade: C1; Salmon & Lange, 2001, evidence grade: A1).
Changes that progress beyond what is considered normal aging include not only memory impairment (particularly episodic memory), but research also points to the occurrence of behavioral-psychological symptoms of dementia (BPSD) as mild cognitive impairment (MCI) begin. A study by Lyketsos et al. (2002, evidence grade: C1) demonstrated that with the onset of dementia symptoms, more than 80% of those with dementia or their caregivers report one or more BPSD symptoms, with approximately 50% of those reporting also having MCI.
With the occurrence of BPSD symptoms, there is greater report of caregiver depression. This is supported by the work of Richards et al. (2003, evidence grade: C1) who demonstrated that measures of psychosocial distress were more meaningful than measures of cognition alone when evaluating outcomes for community-dwelling older adults with dementia. Farias et al. (2006, evidence grade: C1) conducted a study of the everyday functioning of three groups: a normal group, a group with MCI, and a group with AD. Their study supports a need for early diagnosis because people with MCI have sufficient functional impairments as to benefit from targeted interventions.
Even when people do not demonstrate adequate symptoms to meet American Psychiatric Association (1994) criteria, impairments affect their lives in important areas such as safety, work-related functioning, and planning. Their functional deficits are significantly worse than those of unimpaired individuals (Knopman, Boeve, & Peterson, 2003, evidence grade: C1). Researchers concur that impairments exhibited early in the disease course affect more than memory. Other abilities affected may include writing checks; paying bills; shopping alone for personal items, household goods, or groceries; working at the stove; remembering appointments; adhering to medication schedules; and driving. Such study findings point to the needs of those with MCI and early-stage AD related to memory, planning, and language. Many of the tasks identified could be addressed through adaptive interventions. Program development is indicated for compensatory tools for memory and language skills. For example, memory tools such as notes, lists, cueing, and calendars; simple directions; task breakdown; assistance with money management; long-term planning and health care; work implications; driving implications; and safety implications could be targeted.
In their evidence-based review, Doody et al. (2001, evidence grade: B1) found support for the use of cholinesterase inhibitors early in the disease process. Early and accurate diagnoses may positively affect appropriate medication prescription and use. Clinical trials indicate that cholinesterase inhibitors have the potential to positively influence a variety of outcomes, including cognition, global functioning, and activities of daily living. Some studies also indicate there is an effect on BPSD symptoms as well (Doody et al., 2001, evidence grade: B1; Geldmacher, 2004, evidence grade: D).
While there is a need for early diagnosis to help individuals prepare and maintain their abilities for as long as possible, it is also critical that these individuals do not become “medicalized.” This kind of medicalization of AD results in the person becoming lost in the diagnosis and pharmacological treatment. When this occurs, the focus of helping those with AD maintain personhood is lost (Penrod et al., 2007, evidence grade: D). Penrod et al. described the need for a combination of biophysical and personhood interventions based on lived experiences with AD to ensure quality of life and humane care.
An early, correct diagnosis and treatment may also have a positive impact on the caregiver. Early interventions often include education and caregiver training. These kinds of programs are associated with reduction of caregiver burden and stressors, as well as better outcomes for the individuals with AD. Both outcomes have been shown to decrease premature institutionalization of those with AD (Doody et al., 2001, evidence grade: B1; Farina et al., 2006, evidence grade: C1; Gaugler, Kane, Kane, & Newcomer, 2005, evidence grade: C1; Geldmacher, 2004, evidence grade: D; Zarit, Femia, Watson, Rice-Oeschger, & Kakos, 2004, evidence grade: C1).
Racial/Ethnic Considerations in Early-Stage AD
It is important to understand the role of race, ethnicity, and culture and their effects on the experiences of individuals with AD. An individual’s culture may affect the meaning and importance placed on the symptoms of a disease, how one copes with the disease, the use of resources and health care services, how care and support is provided, and the quality of interaction with service providers. Culture is defined as a set of beliefs, norms, and values shared by a group of people (e.g., religion). Race is a socially created category used to describe people according to a set of visual characteristics, such as skin pigmentation (e.g., White, Black). Ethnicity is used to refer to groups of individuals from a common heritage to include language, historical experiences, rituals, food, and music (Zenner, 1996, evidence grade: D). Racial and ethnic minorities are disproportionately at a greater disadvantage in the quality of overall mental health and have less access to mental health services than their White counterparts (U.S. Department of Health and Human Services, 2001, evidence grade: C1).
Research on AD suggests there is a higher prevalence rate of AD among African Americans and Hispanic Americans and that risk factors for developing AD are higher among ethnic minority older adults compared with White older adults (Chertkow et al., 2008, evidence grade: A1; Chertkow, Verret, Bergman, Wolfson, & McKelvey, 2001, evidence grade: D; Clark et al., 2005, evidence grade: C1; Demirovic et al., 2003, evidence grade: C1; Gurland et al., 1999, evidence grade: B1; Heyman et al., 1991, evidence grade: C1; Scarmeas & Stern, 2003, evidence grade: C1). Earlier onset of the disease was found among Latino Americans, suggesting that the prevalence of AD may be higher for this group than what is documented (Clark et al., 2005, evidence grade: C1).
Chronic conditions such as high blood pressure, diabetes, and high cholesterol increase the risk of memory impairment and cognitive decline. Several studies have demonstrated that, on average, African Americans have a higher risk of developing AD and cognitive decline (Manly et al., 1998, evidence grade: B1; Shadlen et al., 2006, evidence grade: C1). Level and quality of education, in addition to environmental factors, have been attributed to low performance of older minorities on cognitive tests (Hendrie, 2006, evidence grade: C1; Manly et al., 1998, evidence grade: B1; Moody-Ayers, Stewart, Covinsky, & Inouye, 2005, evidence grade: C1). One study found that Black participants had 5.1 times greater risk of having AD if they had 10 or fewer years of education compared with their White counterparts. The White participants’ risk was 1.9 times for 10 or fewer years of education. Black participants also had a greater risk of AD when obtaining a lower score on cognitive examinations (Shadlen et al., 2001, evidence grade: C1). Shadlen et al. suggested that these differences are the result of gaps in the quality of education experienced. Demographic and socioeconomic characteristics such as literacy, financial adequacy, age, gender, and education level are factors that influence performance on cognitive testing (Mehta et al., 2004, evidence grade: C1).
Even with this higher prevalence rate, there is a lower participation rate of ethnic minority older adults in AD research and underutilization of formal services (Olin, Dagerman, Fox, Bowers, & Schneider, 2002, evidence grade: A1; Williams & Dilworth-Anderson, 2002, evidence grade: C1). By the time African American and Hispanic American older adults decide to visit a primary care or diagnostic clinic, cognitive impairment is more severe and behavioral symptoms are typical of the early to middle stages of the disease (Hargrave, Stoeklin, Haan, & Reed, 2000, evidence grade: C1). In addition, clinical manifestations of psychosis and mood disturbances are often present (Harwood et al., 2000, evidence grade: C1). There is evidence to suggest that cognitive function mediates the frequency of functional decline among African American older adults (Moody-Ayers et al., 2005, evidence grade: C1).
Understanding of how cultural norms, values, and beliefs influence the daily manifestations of AD and how individuals with the disease cope and manage is still in the early stage. Caregiving researchers have found that “cultural values and beliefs about illness and disease among different ethnic groups can shape the meanings they assign to dementia. These values and beliefs can also influence who gives care and why as well as whether caregivers seek help outside the family system” (Dilworth-Anderson & Gibson, 2002, p. S61, evidence grade: A2). What happens in the earlier stage of the disease when a caregiver is not yet identified and the individual’s activities of daily living are not affected has yet to be understood.
Consequently, researchers must purposefully include ethnically and racially diverse groups to better understand their particular needs in early-stage AD. Further, because of the higher prevalence and underutilization of services, efforts to address education about the disease and the need for early diagnosis among ethnic minorities are warranted. Olin et al. (2002, evidence grade: A1) suggested that increasing community involvement via targeting agencies, educating the community about the disease, and having providers and researchers become more culturally connected are approaches to address these needs.
Need to be Heard and Emotional Cognitive Needs
The published research describing the self-identified needs of people with early-stage AD is limited, although growing (Cotrell & Schulz, 1993, evidence grade: D; Zarit et al., 2004, evidence grade: C1). Most published reports in this area are based on personal stories or are qualitative in nature; therefore, they are not included in this article. Some of the work on loss of personhood in AD was described earlier in this article (Burgener & Dickerson-Putman, 1999, evidence grade: C1; Clare, 2002, evidence grade: C1). These studies build on the work of Lawton (1994, evidence grade: D), who described the “stripping” of personhood and the need of individuals with dementia to be listened to. These collective findings support that individuals with AD are very much aware of the changes and losses inherent in the disease. Findings also support that their perceptions remain stable over time (in the 6-month time frame studied) (Clare, 2002, evidence grade: C1). A strong relationship was found between negative caregiver feelings toward the person with AD and the person’s productive behaviors and outcomes (Burgener & Dickerson-Putman, 1999, evidence grade: C1).
In a study by Zarit et al. (2004, evidence grade: C1), individuals with AD found it helpful to talk with others in early-stage AD and their care partners. The issues that were self-identified and shared by their partners in the memory club included (Zarit et al., 2004, p. 265):
- To understand the diagnosis and its implications (the need for knowledge and education, the need for early diagnosis).
- To explore feelings of loss, grief, and sadness, as well as hope, love, and fortitude.
- To maintain or retain feeling connected to one’s self and to the larger community of family, friends, and peers (the need for education of health providers to the perspective and maintained awareness of the person with AD).
- To understand emotional and cognitive needs (BPSD).
- To strive for emotional and physical well-being and avoid excess disability (the need for health promotion, the need for safety).
- To balance increasing dependence and the need to maintain independence (the need for assessment of individual losses and strengths for individualized plans of care).
- To plan for the future but focus on living in the present (emotional and cognitive needs).
The need to provide early psychosocial support for individuals newly diagnosed with AD and their caregivers (soon after receiving even the tentative diagnosis) has been identified. Early support has been related to better outcomes (Brodaty, Gresham, & Luscombe, 1997, evidence grade: C1; Moniz-Cook, Agar, Gibson, Win, & Wang, 1998, evidence grade: B2).
Need for Information and Knowledge
Zarit et al. (2004, evidence grade: C1) also pointed out that most educational programs and literature are targeted at middle-stage to late-stage AD. Few materials exist that are focused on the needs of individuals with AD in earlier stages. Information must be given in such a way that older adults with AD will use it. When given brochures with encouragement to read, people with AD will often not read or use the information. It often takes an extended period of time for them to begin to process and try to understand the implications of the diagnosis, so timing of the information and the way in which it is shared is critical (Moniz-Cook et al, 1998, evidence grade: B2; Zarit et al., 2004, evidence grade: C1). Support is a necessary prerequisite to planning and working on improving or retaining memory ability.
Clinically significant levels of depressive symptoms are generally found in 15% to 30% of individuals with AD (Teri & Wagner, 1992, evidence grade: A1), although they often do not meet the diagnostic criteria for major depression. A 4-year longitudinal study evaluated factors related to the development of depressive symptoms in people with AD (Gilley, Wilson, Bienias, Bennet, & Evans, 2004, evidence grade: C1). The researchers found greater cognitive impairment resulted in a small reduction in depressive symptoms and a modest increase in somatic symptoms. They also found that younger people with AD had more intense depressive symptoms. Premorbid personality also influenced the degree of depression. These findings support that people with early-stage AD are more likely to have depressive symptoms and that individual assessment is needed. Because depression is treatable, it is essential that it be recognized in those with AD in the early stages to maximize their potential to retain and regain ability.
Memory difficulties are a defining feature of AD and are one of the main problems experienced by individuals in the early stages of the disease. A number of cognitive abilities, such as visual and auditory discrimination and the ability to learn and retain motor skills, are unaffected until the very late disease stages. The focus of assistance for people with early-stage AD needs to be on losses such as memory and using retained skills to regain or minimize losses (Salmon & Lange, 2001, evidence grade: A1). Memory difficulties can have a major impact on self-confidence and can lead to anxiety, depression, and withdrawal from activities. Withdrawal can result in a general increase in symptoms, including memory loss. In early-stage AD, the difficulties lie primarily in taking in new information and forming new memories (Christensen, Kopelman, Stanhope, Lorentz, & Owen, 1998, evidence grade: C1). Needs related to cognitive losses in early-stage AD include optimizing retained memory and finding ways to compensate for difficulties.
Behavioral-Psychological Symptoms of Dementia
The incidence of BPSD begins with evidence of cognitive impairment (Aalten, de Vugt, Jaspers, Jolles, & Verhey, 2005, evidence grade: C1; Lyketsos et al., 2002, evidence grade: C1; Manning, 2004, evidence grade: D). These symptoms have been correlated with adverse effects for both care providers and those with AD, especially affecting quality of life, rapid decline, and early institutionalization (Aalten et al., 2005, evidence grade: C1; Burgener & Twigg, 2002, evidence grade: C1; Lyketsos et al., 2002, evidence grade: C1). Apathy and depression were the most common BPSD reported in early-stage AD (Aalten et al., 2005, evidence grade C1; Manning, 2004, evidence grade: D). Aberrant motor behavior occurred less frequently but followed the same pattern as apathy (Aalten et al., 2005, evidence grade: C1; Manning, 2004, evidence grade: D). The study by Aalten et al. also revealed that pharmacological treatment did not influence the course of neuropsychiatric symptoms in dementia.
Findings by Onor, Trevisiol, Negro, and Aguglia (2006, evidence grade: C1) support the evidence that although behavioral disturbances may be mild, people in early-stage AD were less aware of their cognitive and behavioral deficits. These perceptions also vary from those of their caregivers. This discrepancy may disrupt the relationship between the caregiver and person with AD, further contributing to early institutionalization. Collectively, these findings support the need for programs that address behavioral symptoms in early-stage AD.
Need for Health Promotion
No studies were found that specifically identified the need for health promotion, although the need for services and programs that decrease excess disability and early institutionalization may be considered as having a health promotion focus. Although not specific to individuals with AD, findings from the study by Lave, Ives, Traven, and Kuller (1996, evidence grade: B1) indicated that older adults were more likely to participate in health promotion activities when they were supported by Medicare; these results have implications for health promotion activities for people with early-stage AD.
Individuals in early-stage AD may also be more willing and able to participate in health promotion activities if funding for these services are available. One specific study aimed at testing a health promotion activity was conducted by Fitzsimmons and Buettner (2003, evidence grade: C1). This pilot study of an experimental, 10-week college course for individuals with newly diagnosed dementia focused on teaching methods for promoting and maintaining optimal health outcomes. Following the diagnosis of AD, the focus of attention is on the disease diagnosis and medical management. Little attention or effort is given to promoting healthy lifestyles contributing to quality of life, maintenance of function, and prevention of excess disabilities. Evidence exists for the need to help people in the early stages of AD with health promotion to sustain their functioning, maintain quality of life, and prevent premature institutionalization. In addition, unique and effective health promotion interventions have been evaluated, providing models for widespread dissemination.
Need for Safety
Cognitive deficits pose inherent threats to safety. Difficulties in processing, task breakdown, memory, sequencing, and decision making are among the deficits that create safety concerns. Onor et al. (2006, evidence grade: C1) found that individuals with AD are less aware of the behavioral consequences related to their cognitive deficits and do not update their self-perceptions of performance. Further evidence suggests that although awareness persists in dementia, people with AD may be unable to appraise the severity and consequences of their deficits in everyday life (Derouesné et al, 1999, evidence grade: C2).
Nygård and Starkhammar (2003, evidence grade: C2) examined difficulties in telephone use for individuals with AD living in the community. They found that individuals with AD have difficulty using the telephone effectively and communicating concerns during use. These factors contribute to issues of safety for those with AD.
Multiple needs and appraisal limitations may contribute to an increase in safety concerns. A cohort that has not been evaluated separately, although unique needs are evident, is individuals with AD who live alone. These individuals experience a higher rate of institutionalization (Newhouse, Niebuhr, Stroud, & Newhouse, 2001, evidence grade: D; Tuokko, MacCourt, & Heath, 1999, evidence grade: C1). Tierney et al. (2004, evidence grade: C1) developed a predictive model for institutionalization, which included perceptions of fewer social resources, poorer Mini-Mental State Examination scores (mean score = 21.4, SD = 3.8), and presence of chronic obstructive pulmonary disease. The researchers also identified a pattern of self-neglect among those living alone, in which the individuals neglected to and personal hygiene. This cohort also sought emergency medical interventions as a result of failure to follow instructions or solicit health care.
These poor health outcomes and increased institutionalization rates may be indicative of the need to identify people with AD who live alone as a distinct cohort requiring interventions to assist in remaining safe in the community. In their Home Safety/Injury model, Hurley et al. (2004, evidence grade: D) provide examples of risky behaviors that are related to actions of commission or omission. These actions are implicitly hazardous and include getting lost, falling, becoming exposed to elements, experiencing burns or abrasions, medication mismanagement, inability to recognize objects or sounds, and apraxia. Increased frailty of people with AD was also identified as a risk factor for injury. The authors concluded that the need to provide for safety may be enhanced by making home and environmental modifications, improving caregiver competence and knowledge, and increasing provision of social supports. Safety remains an important need consideration in individuals with AD, especially as they transition through the early disease stages while adapting to changes related to declining cognition and function. The cohort of people with AD who live alone is especially vulnerable.
This literature review suggests a lack of research in the area of needs identification, especially in the early stages of AD. Attention should be paid to stages of the disease process when undertaking other studies to adequately define what problems, responses, and interventions are appropriate at which stages. As researchers continue to refine definitions, it becomes more important to have distinct descriptions of stages of the disease and determination of the kind of dementia being investigated.
A variety of empirically based needs have been identified for individuals in the early stages of AD. The need for programs that take into account preserved self-awareness was identified, including programs that address preservation of self-esteem, emotional support, maintenance of abilities, information and educational resources, management of behavioral symptoms including depression, and health promotion. The need for early and accurate diagnosis of AD was identified, given the effectiveness of medications and nonpharmacological interventions in slowing disease progression. Safety concerns were also identified. Collectively, this review of needs for individuals in early-stage AD may be used to inform program development.
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